Dear Diary: It’s Been 7 Weeks Since My Last Confession

Honestly, right now this post definitely feels like confessional. Sadly I often don’t write because I am afraid to confess to the world how Debbie Downer I really feel inside lately. I keep waiting for it to pass. To have a solid week. To feel back on track and armed with some inspirational learning or technique that tipped the scale to share. Sadly, not today. Not for the last seven weeks. And I don’t know if ever (I know, I know…a wee bit dramatic). But that’s how I get after two sleepless nights. This time I have simply decided to give in to no sleep and start my day at 5 am. And what better way than with some chill tunes on Apple Music and a confessional.

I had a flare. It kicked me on my ass. I had no idea how quickly I could fall and how deep the hole could be. Frankly, I’m still crawling out by the skin of my teeth. Tonight, after a fabulous Easter Dinner with family and friends, I came home and had a complete emotional and mental meltdown.

I’ve been battling hard with the anxiety and depression that comes with a flare (excruciating pain in my left ribs…again…mother fawker). And I’ve been hiding it from most everyone. Sometimes I think if I just plaster a smile on and keep pushing, the pain will go away. Alas, not so much. The nicer weather is helping but it’s still a battle. On Sunday, thankfully a beautiful friend reached out to me, quite out of the blue. I think Mamma K or Dad whispered in her ear that I needed her. Her understanding. Her compassion. Her empathy. And her learnings. She also has fibro.

I couldn’t hide one more minute. I couldn’t message her that I was fine, having more good days than bad, that I was working the program and inching ahead. For whatever reason, it started spilling out. Every time I think I’ve reached acceptance, I come to find I haven’t. Not even close. Deep down I feel such a deep and profound sense of failure. Like I’ve somehow ruined mine and hubby’s life.

I guess I do try to hide it (fake it till you make it, right?), tell everyone “I’m just tired” or make compromises but the cost of that is high. Putting on a smile. Pushing through. Trying my best to do all the “things” I’m being told to do to “get better”. It always seems to catch up to me. It always seems to backfire.

Emotionally and mentally I don’t feel anything close to stable although I am a sure to the outside world it looks like I’m managing. The other day Julie and I were out walking the dogs….good day, right?! We were sitting enjoying the sun when I saw two colleagues. Beautiful, fabulous, supportive colleagues that I know…well…and adore!!!

As we are standing there hugging and swapping stories, I have a huge smile plastered on my face. They are talking about how great I look. I’m asking about work and life calmly. Yet inside my anxiety flew it into OVERDRIVE in seconds. I went from relaxed to a near panic attack in 2.5 seconds. I actually felt my body go into flight or fight. My adrenaline spiked, I started sweating, my stomach rolled, I felt dizzy, my mouth went dry and I wanted to ESCAPE. RUN NOW!!!!

Why….cause I was afraid I didn’t look ill enough??? Nope. Both these women work in the benefits division. They, more than most, understand what I am dealing with. They are two of the most compassionate, empathic and supportive women I know. I know they were genuinely thrilled just to see that I left the house, obviously managed a walk and looked great. But I went into FLIGHT because their fawking names were jumbled in my head. I couldn’t get pronunciation right. While talking, I was going through the list of names in my head at warp speed. I wanted to introduce them to Julie and I couldn’t. I couldn’t get the names right in my head….

WTF?!?! I’m a damn intelligent woman and THIS is what I am reduced to?

Yes, I know you are reading this thinking…shit Natalie, relax. This happens to the best of it. Does it happen to you seventeen, twenty, thirty times a day? On my and hubby’s anniversary trip I couldn’t get Superstore out of my mouth (while staring at the sign) and kept calling it the SuperOpera…at least since I was staring at the store name he knew what I was talking about. Fawk me. I’m a babbling idiot. Good lord.

Working with Occupational Therapist (OT) and my shrink I keep trying to ‘get better’ by doing the things they recommend. Plan Natalie. Stick to the schedule Natalie. Plan your rests. Don’t overdo it on days when you feel marginally better. Work through the pain Natalie. Even if you can only do a task for 10 minutes instead of 30 minutes, try!  This will help you retrain the brain to discontinue those nasty pain pathways it’s built.

I try. I swear to God I try. And every day I feel like I let them down. Or I let hubby down. Or I let other family and friends down. And let’s be clear, OT isn’t asking for the moon. Given that her job is to get me ready to go back to work, getting and working a schedule that mimics a work day in some sort of manner is the approach for treating Fibromyalgia. My shrink concurs saying that it is the most effective treatment. And both my OT and shrink are encouraging. Always pointing out the positives. The wins. But for me, this goddamn schedule has turned into a slapstick upside my head of my daily failures. I can’t see the wins for the losses. I can’t seem to get it right. Not even close. Yes, I do bits and pieces here and there. Some days more than others but what I’ve come to learn is that even the smallest of win seems to almost always come with a loss. Everything is a compromise. Take from one spot and you’ll have to make up the deficit on the other end.

The Schedule:

  • 7:30 – Up, feed and water dogs
  • 8:30 – Meditate 30 minutes
  • 9:00 – Rest 1 hour (colouring, bath, sit outside, sit in hammock etc)
  • 10:00 – Cognitive task (write, research etc)
  • 11:00 – Rest
  • 12:00 – Lunch/rest
  • 1:00 – Walk dogs (30 minutes)
  • 2:00 – If didn’t walk dogs, gym and walk 30 minutes/if walked dogs, cognitive task
  • 3:00 – Rest
  • 5:00 – Meal prep
  • 6:00-8:00 – Relax/hubby time
  • 8:00 – Mediate (30 minutes)
  • 8:30 – Plan next day
  • 8:45-10:30 – Relax/hubby time
  • 9:30 – Take nighttime meds
  • 10:30 – Heating pad and read
  • 11:00 – Lights out

I mean, this isn’t rocket science. This always seems doable but, I haven’t ever checked off even close to half the boxed. Oh I get bits and pieces. The more bits and pieces I get during the day, the less I have in the evening. The less bits and pieces I get during the day, the more I have in the evening. And then some days it doesn’t even matter – it’s just a shit day and a shit evening. Complete right off.

I feel like I never get it right. There’s no consistent (even if tiny) continual progression forward. Frankly, how could there be? I don’t/can’t consistently stick with it. How does one hang on like that? How does one stick with it? I let OT down, I let my shrink down. I let hubby down. I let other family and friends down. I know the reality is that none of these people have these massive expectations on me. They love me. They want me to succeed. They support me. The real truth….I am constantly letting ME down. I have these expectations, and neither my physical, mental, or spiritual bodies seem to be able to manage it.

I told my OT the other day that she doesn’t get it in large part because this is the only “me” she’s known. She never met the “me” I was two years ago or even five years ago. I thought of myself as one of the strongest women I know. I’ve battled some serious shit in my life. And after 11 years of therapy and a hell of a lot of work, in my late 20s, I finally got a handle on my shit. And I grew into this amazing, confident, vibrant woman who owned her world. It was amazing.

So to have fallen from that, well frankly, it feels like a death, and I am in deep mourning. How long this mourning period will last, I have no idea. Forever? How does one get over the death of a beloved self?

And I know I should draw great strength and comfort from the above experience. I mean, I literally dug myself out of a very deep emotionally broken hole. It took years. I slowly but surely did the work and came out of it better, stronger, more fabulous than ever. I held such pride in that. My 30s were the most incredible period in my life. I had never known such self-love, self security, confidence and inner peace and happiness. I was finally settled into my own skin, proud of who I had become.

And I still reflect on that accomplishment with great pride. But it was different. There was no one telling me I had an illness with no cure. I knew that I was suffering from incredibly low self-esteem, I had an almost paralyzing fear of abandonment after the trauma of losing my Dad so suddenly at such a critical and young age, I had a lot of shame and guilt to contend with over choices made very early in my teenage years…and I had anger issues…serious anger. But with therapy and hard work, I was able to understand the reasons and the source. I knew it wasn’t permanent and that change…the power to change…existed within me. I forgave myself and I rebuilt from scratch. It truly was a thing of beauty.

This isn’t that. No amount of will, therapy or drugs is going to change the fact that I have fibromyalgia. I need to learn to accept, live with and manage. I’ll always have pain…I’ll always deal with flares…and debilitating depression and anxiety…and fatigue that makes a week of sleeplessness look like child’s play…and deep muscles pain, cramps and joint pain…constant ringing in my ears….numbness in my hands…waking up feeling like my feet and ankles are broken…dizziness…insomnia…and let us not forget the cognitive impairment called fibro fog that makes me feel like I’ve been reduced to a five-year old. All this…for the rest of my life???? No cure and hey…no drugs that really help. I mean, they might help this or that symptom a little but then we’ll have to give you other drugs to counteract the side effects of the first drugs…until your medicine cabinet looks like a freaking pharmacy.

And if that is the case….and here’s the real basis of the fear…what if this is as good as it gets?

What if right here and now is as good as it gets? No matter how much I work the schedule, the therapies, the programs, the pharmaceuticals etc., what if I’m as far as I am going to improve and now it’s about managing what I’m left with. I mean isn’t that what acceptance is? Accepting what is, right here, right now. And finding a way to accept and be ok with that. Sure it doesn’t mean you don’t stop trying, playing around with meds etc…but what if what I’ve gone through the last three to six months is it….no matter what I do, say or try. Because I’ll tell you, that’s what it feels like to me. Oh sure I have decent days…maybe even a few decent weeks in a six-month period but for me, overall, I don’t feel any further ahead now than I was six months ago. And my medicine cabinet would have you believe that I’m actually worse given nearly all my medication levels have double and now I’ve added narcotic pain meds to the mix (something I have been trying my best to avoid).

I’ve been told by the experts that they key to “getting to the best place you can be, is through acceptance.” But tell me this…how do I accept the fibromyalgia reality when everyone wants me to keep trying to “get better” so I can get back to work? I mean, shit. I WANT to get back to my life, to my career, to my work, to my colleagues who I absolutely freaking adore! But how does acceptance work when you are still trying to “be better now”!

I’m always trying. Pushing. But fawk, I’m exhausted. Earlier this week, I lay in bed and cried for  hours just exhausted from trying and feeling like a failure…wondering what’s the point anymore? Is this it? Is this the new me? Is this as good as it’s going to get? And if it is, what does that mean for my life? For my marriage and the life we dreamed of? What does that mean for my work, my career, my independence?

How do I accept being a shadow of who I was?

My amazing friend who was messaging listened….and she gave me a lot to think about. A lot of questions to ask myself. Questions she’s faced and answers she’s found. I took a lot of solace in her words knowing I’ll be thinking about them a lot in the coming days and weeks as I wrestle with this. She wrote me that:

“We are not weak sickies. We are Fibro Fucking Warriors!”

That spoke to me. That made me cry with immense relief. Yes. Someone gets it. I am not alone. I am not misunderstood. I am real. My struggle is real. And it’s ok. Someday maybe I’ll be able to see myself as a Fibro Fucking Warriors (FFW)!

She talked to me re-prioritizing her life and social circles as part of acceptance and not to be afraid to do that. She reminded me that sometimes when so much has been taken away, we start to learn to appreciate even more what we do have. And she told me how she works on her self-worth every. single. day…now more than ever we need to remind ourselves daily of how much we do matter. We need to write down the good things about ourselves to read and recite in the mirror when the ugly self loathing creeps in.

So a lot of doom and gloom and life questions in this post and such is life. I am tired of being worried of scaring people off. I am tired of seeming like a chronic complainer. I’m just gonna try to come here regularly and tell you how it is in my world. And if it sucks, it sucks. And if sucks for a lot of posts, it is what it is.

Please know I am not looking for your pity or am posting purposefully wanting y’all to LIFT me up with your encouraging comments (although your words are always deeply appreciated). There’s no agenda here. No expectations on my part. I just want to share, to maybe help someone else out there know they aren’t alone in how they feel. Hearing from an inspirational FFW today reminded me of that…that I’m not alone in how I feel. Others have been where I’m at. Others are still there. Others are even in darker places. For all of you out there, I hope my words help. I hope you know you aren’t alone. We are all Fucking Fibro Warriors no matter what stage or place!!!

Right now, this very second, I am loving myself for my raw honesty and my bravery to put it all out there. I am deeply appreciative of hubby, my family and friends, and my messenger FFW!!!

Tell me, what do you love about yourself today?

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Dear Diary: Fibro Fog Fun Part I

Fibro Fog. It’s been one of the toughest symptoms of Fibromyalgia I’ve had to come to terms with.

Dr. Ananya Mandal states in this article that: Studies have shown that over 50% of patients with fibromyalgia suffer from mental confusion and decline of memory and mental faculties. Mental confusion along with difficulty in concentration and loss of memory is often termed “fibro fog”. These features are termed cognitive dysfunction and include common manifestations such as:

  • forgetfulness and memory problems – tests reveal that the memory components affected include impaired working memory, episodic memory and semantic memory – they have a poorer free recall
  • concentration difficulties and attention problems
  • poorer verbal fluency and verbal knowledge
  • difficulty in focussing
  • impaired judgement
  • impaired ability to perform simple cognitive tasks
  • slowed or altered speech and other speech problems

No Shit!

As a writer and strategist, words, ideas, strategies, quick wit, sharpness etc., has always been my thang. Kind of what sets me apart, you know. My talent. Fibro Fog has left me feeling like a crucial part of what makes me….me….has been ripped away. This has contributed immensely to my depression and anxiety. I have shied away from a lot of friends, colleagues, events etc. because I haven’t wanted people to see the new me, which often feels like a shadow of who I was. Embarrassed, shame, feeling like a failure…it’s all part of it.

This fall when I started seeing my shrink, we decided I needed to start clawing back this piece of who I am. Testing my limits. Pushing harder. Learning to accept my new state of being with no anger or judgement. Working with what I’ve got. Writing and getting back to blogging is playing a big part in this. The other thing I’ve started doing is verbalizing my cognitive struggle so that A) I don’t cower in shame over my cognitive disfunction (I think this is playing a big role in acceptance) and B) people around me have a better appreciation for what’s going on inside my head.

And come on, let’s be honest, I’d rather find a way to laugh at myself with love and compassion rather than getting angry or depressed about it. It is what is…let’s find a way to embrace it and….laugh at it! And that’s just what hubby and I’ve been doing…laughing!

Last week hubby and I were watching TV and a commercial came on for Little Caesars Loaded Crazy Bread Bites.

Yummy right! Here’s how the conversations went.

Me: OMG I want to try those. I wonder if they taste like those….things…you know…the things I like so much from….that place!

Hubby (giggling): Ummmm…nope…no idea!

Me: Fawk…you know…the things….from….St. Mary’s???

Hubby (giggling harder): St. Mary’s…like the street????

Me: No, no, no…you know…the….jumba jumbas from…Smitty’s???

Hubby (nearly rolling on the floor): jumba jumbas???? Not ringing a bell. And we don’t have a Smitty’s any more…

Me (starting to giggle at the insanity of our convo): I know….shit…it sounds like Smitty’s I think…jumba jumbas…fawk…

Hubby (near tears): Babe I’m trying to figure it out but jumba jumbas are not sounding familiar.

Me: Fawk, fawk, fawk…it’s like right there…but I can’t seem to grab it…St. Mary’s, Smitty’s….fawk!

About two or three minutes go by as hubby turns his attention back to the TV, clearly giving up on this mystery while I continued to ponder and mumble. Out of the blue it comes to me!

Me: AHA!!! East Side Mario’s…..Bada Boomers bread sticks….

Hubby: You honestly thought I would be able to get that from Smitty’s, St. Mary’s and jumba jumbas….

Me: Well, I think the link was there. Phonetically???? Makes perfect sense to me….

We both roared laughing. I told hubby it gave him another good one to share with his colleagues at work. A glimpse into the world of living with someone with Fibro Fog. The fun never ends around here! 🙂

Happy day!

Natalie

Dear Diary: I Found The Secret…Again

Thank You Picture

First, I’d like to start out by giving a big shout out to my new subscribers! Welcome. Hope y’all enjoy! And thanks everyone for the comments over the last couple of posts. You guys rock!!!!!

I woke up this morning at 7 am super groggy. I’m fighting a cold so last night, along with my regular medication routine, I added a flexerol (you know…the little yellow houses) and two Buckley’s nighttime. Shabam!

After feeding the pups, all I wanted to do was crawl back in bed and sleep the day away. But my OT was pretty adamant last Friday that I try very hard this week to stick to my schedule. So at 8:30 I drug my sorry body outside for my 13-minute walk up and down the driveway. It’s such a crisp and bright morning, the walk certainly helped wake things up. When I came inside, instead of letting the call of the bed snag me, I went into my office to meditate.

I am happy to report that I feel much more energized and so far, morning routine is on track. #rockstar

This morning’s meditation was a new one for me, and it turns out it was a great reminder that I’ve wanted to write this post for awhile. Unfortunately, I can’t link to the meditation because it’s not available on YouTube. It’s by Dr. Joe Dispenza, who I got turned onto when Mom started teaching me how to meditate. She and a group she meditates with are following many of his programs. I’d take a crack at explaining his approach but you’d be better off reading his About page since it’s a wee bit complicated.

I am doing his morning and nighttime meditations for the next little while. They are about defining a vision of the future instead of a memory from the past. And although Dr. Dispenza talks about frontal lobe and activating different parts of our brain etc., I realized that the essence of his ideas aren’t unfamiliar to me.

Most of us have watched the documentary or read the book, The Secret by Rhonda Byrne. Or the more academic version, The Power of Intention by Dr. Wayne Dyer. When a friend of mine, Kelly, first started reading my blog posts earlier this fall about what I was going through, she messaged me asking if I had read the Secret, and she told me how it had completely changed her life.

I had read the book a number of years ago when the popularity of the theory seemed to be every where a person looked. And frankly, I thought I was still living the ideology. But I had never seen the documentary and thought I’d give it a whirl. Turns out I haven’t really been living the power of intention at all.

I have been living in the present and the past. Like most of us, yes, I think about the future and what I’d like or hope for but other than fleeting thoughts and ideas, my main concern has been rooted very much in the present and even the past. Pain, depression, anxiety and fatigue have a way of doing that to a person. Without even realizing it, you become entrenched in it.

The meditation was a huge reminder that in order to manifest the future I want, I need to:

  1. Ask the universe for what I really want, specifically and in the present tense.
  2. Believe it is already mine with unwavering faith.
  3. Receive it…feel, as deeply as I can, as if it’s the here and now.

Fantasy to Fact!

In my meditation this morning, Dr. Dispenza led me through an exercise of visualizing future moments that are representative of where I want to go. I pictured hubby and I on stage addressing a huge crowd of folks with laughter, tears and inspiration. I saw us together taking selfies with people and signing books. I saw myself writing…words flowing easily and freely from my mind to the pages of my next book. I played the scenes over and over in my mind.

Then, with Dr. Dispenza’s prompting, I conjured deeply how those moments would feel. Experiencing the emotions, feelings and senses as if I was there. Living and breathing it. For real. The sense of awe that comes from touching the hearts of so many people. The feel of the stage lights, warm and intense, and the echo of our voices through the microphones. The joy that comes from sharing laughter with everyone in the room. The humbled feeling of privilege, honour and respect from sharing our story. A deep hope and desire that we helped even one person.

We finished off the meditation manifesting feelings of deep gratitude and appreciation for this visional life. I gotta say, it was intense, wonderful, empowering and uplifting. I can’t wait to try the nighttime meditation tonight. Stay tuned.

My struggle with the power of intention or the law of attraction is living it every day. Like most of us, I fall into old thought patterns focused on the here and now; the struggles and even the wins. The future feels like some distant thing that I likely have no real control over. I get wrapped up in the day-to-day and forget to consciously work on manifesting the future I desire.

I am reminded of the sayings from last week ‘what you focus on, grows‘ and ‘ what you resist, persists‘. Applied realistically, that means when I live focused solely on what’s going on right now, I put it out to the universe to send me more of that. Well today that would be grogginess and pain. Ohhh sounds fun…not!

I do believe the theory that my thoughts and emotions have an energy in and of themselves. What I think and feel emits out of me sort of like a scene in a movie when a superhero flies and hits the ground and you see the ripple effect of energy being displaced.

Gratitude exercises are rooted in this idea. By taking stock every day of the things I am grateful for, and embracing that feeling of gratitude and deep appreciation, I intentionally put it out to the universe to bring me more of that good stuff. But what if I can take that a step further and actually manifest my best future? My wildest dreams? My deepest desires? Well now…that’s pretty interesting!

Heck…I mean it’s worth a shot right! #youbetcha

Yesterday’s Meditation:

Today’s Tunes (really digging the Fifty Shade soundtracks for writing inspiration):

Happy Day!

Natalie

 

Dear Diary: Pain Is My Friend

What we resist, persists.

What we focus on, grows.

Now that I’ve been seeing a shrink, I have started thinking a lot about my relationship with pain. I have to admit, it felt strange at first. A relationship with pain? Isn’t it just what is? Do I honestly have any control over pain?

The answer surprisingly came to me in an “aha” moment when I thought about the above two statements in relation to how I feel about pain. Honestly, I hate it. I mean, who doesn’t? It’s pain for God sakes! Beyond that, I am angry about it. I fight it. I rail against it. I push through it. I show it who’s boss (or so I tell myself).

But….by being constantly focused on how much I hate pain, how much I have lost, how much I feel limited, could I be contributing the consistent persistence of the pain? Even contributing to the intensity? Are my thought patterns and feelings about pain making things worse?

Don’t get me wrong, I realize that I can’t “think happy thoughts” to a cure (working on acceptance…more on that soon) but what if I can reduce my pain by improving my relationship with it? What if I can improve my quality of life by…embracing…pain? Is such a thing possible?

There’s really only one way to find out. Change the thinking game and see what happens. So I am trying to see my pain as my friend. My constant companion. My partner in crime.

Pain in a very important guidepost in life right now. It plays a very pertinent and crucial role in telling me when I am starting to hit my limit. If I listen to it and respect it, it can be a powerful tool and friend to help me ensure more good days than bad. On the other hand, when I give it the finger and tell it to pound sand, it generally smacks me upside the head and knocks me on my ass with bad day after bad day.

Just like my BFFs, my pain doesn’t pull any punches. It’s raw honesty. It doesn’t play games or manipulations. It speaks the truth, and it always give me the oppportunity to have my say. Sometimes it will compromise. Other times, it will draw a line in the sand but, as I am starting to learn, never for some arbitrary reason.

I am learning to trust it. I am learning to appreciate the role it’s playing in my life right now. I am learning to think about it differently so we can thrive as best as we can in this body. I am learning to even love and embrace it because damn it, it’s part of me right now, and I am committed to loving all of me (now more than ever before). I am learning to walk hand-in-hand with it…trusting it, knowing it’s here for a reason.

And frankly, hating something that is with me every. single. day is exhausting.

I won’t say that every day I walk the BFF pain train because some days I still do want to punch it in the face multiple times…and some days I let myself wallow in anger or sadness over it. Some days are just too tough not to. But now, more days than not, I wake up and say hello to my good friend pain, who is always especially present in the mornings. We have a frank conversation about what’s on tap for the day and the week to come…and we negotiate…we talk it out just like good friends ought to.

Today’s Meditation (it was lovely):

Today’s Tunes:

Happy Day!

Natalie

Dear Diary: I Got a Booby Do

So the other night, hubby and I are hanging around the kitchen trying to pull something together for supper when he looks at me kind of strange. Eyebrows raised and with a playful flirt I ask him, “what’s up…you checking me out???

He stands there with a huge grin on his face and says “baby…you got yourself a booby do…

Excuse me…what in God’s name is a booby do???”

You know…when your belly sticks out farther than your boobies do

ROFL!

I’ll admit it, I went off the eating rails most of the summer. I was so dark, exhausted and in so much damn pain. Y’all know how it is when you feel like shit all the time, you seek comfort in whatever forms you can get it. For me, my choice of drug was Parlour’s Heavenly Hash ice cream (or as my bestie loves to call it…old lady ice cream).

And reach for it, I did. Daily. Sometimes for all three meals. I put back at least a litre, if not two, a day. Honestly, if I was awake, I was shovelling ice cream in my face. And it was comforting even if deep down, I knew that a) it wasn’t real comfort and b) it was short-term warm and fuzzies.

I’ve been off the ice cream crack addiction since September but I wouldn’t say I’ve been reaching for salads in its stead. This fall I did an elimination diet for about six to eight weeks, and I learned a ton but, with my pain and lack of energy, it was way too much to keep up. And early this winter, Mom and I took a plant-based cooking class and have talked about eliminating meat, dairy and eggs. Again, the idea of trying to learn cooking all new recipes etc. is daunting and overwhelming.

Interestingly, I talked to my shrink about it last week and she articulated that there’s really no research that shows a huge benefit in fibromyalgia symptoms from any one specific eating program. Of course, eating healthy, fresh, whole foods would provide benefits but what she said is it’s not a “cure”. She told me that for every pound of body weight, we put seven pounds of pressure on joints and limbs so losing a few pounds would likely help me feel “better” but it’s not likely to be life changing.

I am learning that I need to ask myself more often “are the benefits of this activity, given the potential costs, worth it?” Everything now comes up against an invisible criteria:

  • What will I get out of this activity? Laughter, happiness, relationship benefits, short or long-term health benefits that reduce pain, depression or fatigue etc?
  • How might I pay for this activity? Pain, exhaustion, depression etc?
  • What other activities do I have scheduled for the next few days and how might this choice impact those?
  • Is it worth it? Is the cost-benefit there?
  • And if the cost is too high but I really want to say yes, is there an accommodation I can make to lower the cost to make it worth it?

It’s about being a lot more thoughtful about where and how I invest my time and energy to ensure I’m putting it places where it counts instead of just saying “yes” to bullshit stuff that gets me no further ahead and actually sets me back. It’s also about looking at activities that I may want to do but I know are too high cost and evaluating if there is some accommodation I can do to lessen the cost. Now this may sound like pretty straight forward math to y’all but for me, this is really a new way of living. As a chronic overachiever, I am used to saying yes to about everything that comes my way and…somehow always making it happen.

Now I have to learn how to weigh decisions and be ok with saying no…and learn to say no without allowing myself to feel like a failure. This is no small task.

The trip to New York was one of those things that I knew the cost would be high but I also knew that the benefits would be worth it. I rested for the two days prior and ensured my calendar upon my return was supportive of my recovery with limited apts (one being my acupuncture and the other being my shrink knowing these two would aid in my recovery immensely).

A bus tour to see Celine Dion with my Mom this summer was another big event. Unfortunately, I wasn’t as adept to planning and it did cost me weeks to recover. However, it was still definitely worth it to have such an incredible mother-daughter trip…and the lessons I learned from that, I was able to apply to NYC.

Date nights with hubby that are more involved than watching TV together (that ain’t really date night…) I sleep most of the day of to gear up for it and possibly sleep most of the next day…SO worth it!

Cooking new and possibly extensive recipes that require a lot of standing and energy, I’m sorry to say, doesn’t sound like it’s worth it.

That being said, I do think moving to a healthier eating lifestyle would definitely be worth it. I just have to find ways to keep it simple or implement accommodating strategies like perhaps asking family or friends who love to cook to help with more involved dishes. It’s about learning my limits, putting my limited energy into high return things, and not being afraid to ask for help for the bigger stuff. It’s coming…stay tuned! 🙂

And don’t think for one minute I didn’t jab hubby back from his booby do comment.

I quickly followed with “well my darlin’ husband, if I have a booby do, you got yourself a dicky do cause your belly sticks out farther than your dicky do.

Finding the funny in the little things! Y’all know that’s how hubby and I role!!

Happy Day

Natalie

Dear Diary: Making Changes

Well y’all might notice a few changes around here, yet again. New header and new focus. But trust me, same flavour of fun. I’ve been reading a lot of blogs lately where people share their experience with fibromyalgia, and it got me to thinking about how I could use my love of writing through this journey to both help others and as a therapeutic measure. And although I won’t deny that a lot of what I am going through isn’t fun, y’all know hubby and I are using our shock and awe humour to help us cope, together. So along with the tears and torment, hubby and I plan to share here how we find the funny in our journey of learning to live with fibroymyalgia.

I say we purposefully because although I’m the one with the diagnosis, he’s having to learn to live with a chronic illness just as much as I am. Not to mention the family and friends who are having to do the same. So I’m hoping this will be a safe place for them to share as well to try and give readers not just a peak inside my world, but a look into the world of a support-system.

Hope ya like it!

Last weekend I hit New York City for the first time with my best gal pal, Jennifer. She won the trip, and we went to celebrate her 40th birthday. A quick trip, fly in on Friday and leave Sunday. It was a doctor-approved trip. Doc thought the change in scenery would help and given that Jen suffers from a chronic illness herself, I knew we’d take the quick trip with ease and flexibility.

We landed Friday late afternoon at LaGuardia (good lord, we thought we were doing a water landing) and after taking an hour to find our driver, we headed into the city. We stayed at the Waldorf Astoria on Park Avenue. What a gift it was to experience such an old and famous venue considering that Chinese investors have purchased it and plan to start renovations later this year. It was impressive to say the least. Felt a little like what old Hollywood might have felt like.

We checked-in and set out to explore.

St. Patrick’s took my breath away. I am not really a religious person but that cathedral was emotionally moving. Incredible. The top of Rockefeller Centre was stunning in the evening and really showcased the immense size of the city. But that skating rink is WAY smaller than it looks on TV. Those peeps should try some lake skating here in Canada. Afterwards we made our way to Trump Towers. Can you say security?!?! I’ve never seen so many large guns. Then it was to Grand Central Station, which is very grand. We capped off the night with Time Square, which was amazing to see in person after seeing it in so many movies. The billboards. Wowzers! We did manage to get accosted by Iron Man and Mini Mouse for photos.

Saturday we spent most of the day at the 911 Memorial site and museum. It was very emotional. I couldn’t believe the number of people that were there, and everyone was relatively silent. You could sense the raw emotion every where you went. We were both honoured to pay our respects. Saturday was capped off with a dinner at the steakhouse that BLEW our minds with deliciousness.

Enjoy some pics of the trip:

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I learned so much on the trip about how I am going to need to learn to alter my old travel ways to accommodate fibro. And isn’t that what it’s all about, learning how to LIVE as fully as possible with this invisible illness?! A quick weekend trip was an excellent way to explore travel with the new me. Here’s what I learned.

  • Plan for a light evening after travelling all day.
  • Buy or bring epsom salts for a soak at the end of each day.
  • Start taking Tylenol every three hours to stay on top of pain management – possibly increase anti-inflammatories from two-a-day to three- or four-a-day for the duration of the trip or at least on the most physically demanding days.
  • Looks at maps and attempt to plan out walking routes so they are efficient as possible.
  • Get roaming package for the iPhone so I can make better use of it when traveling around the city streets where there is no wifi.
  • Don’t be afraid to use the subway system. On Saturday we realized how amazingly easy it was and could have made much better use of it on Friday night.
  • Since sleeping in a flat bed, take more nighttime medications earlier to try and get as much quality sleep as possible.

All fabulous lessons for next time!

I am not going to lie, by the time we got home on Sunday evening I was in excruciating pain with a considerable limp. That left hip went into over drive. It felt like I had gone 10 rounds in the ring. Everything screamed. But before you ask, yes, it was worth it!

Came home and spent Monday and most of Tuesday in bed heavily drugged. Tuesday I had an apt with Brune Clavatte for acupuncture and massage, which was heavenly. On Wednesday, much to my surprise, my pain was under surprisingly better control and my energy was rising. That evening I had an apt with my shrink (chronic pain PhD), and I felt a lot lighter and less doom and gloom.

I was really surprised at how quickly I recovered from the trip. I think coming back and doing the treatment with Brune, seeing my shrink and having less pain-filled sleep as I was back in the “double-wide” (more on that to come) definitely helped me bounce back. When I did a bus tour with Mom to see Celine Dion in August, it took me about three weeks to recover from that but I was back in my gravity chair and had no other support system in place to help with recovery like I do now.

On Thursday I had an apt with my Occupational Therapist (OT), Courtney, from the Foundation Health Centre (multidisciplinary health centre that LTD is paying for). Until now, I had no idea what an OT really does but they are fabulous. She’s coordinating with my shrink to help me put into practice things to start reprogramming my brain and how it relates pain to everyday activities now. To start, we are incorporating routine back into my life. So as of now, every week day, I am to walk the dogs for 10 minutes, rest and then write for 30 minutes (journal, blog etc.). As well, we are working to create a bedtime routine that will hopefully help me get better sleep. Mediation at 10:30 pm followed by getting in bed with a heating pad and reading. Eyes closed by 11:30 pm. Weekends footloose and fancy free. I’ll keep y’as posted on how it’s going.

Before I close, can I just tell you how much I am enjoying meditation. Mom, who we now know is always right, has been suggesting I try meditating since I was a young teen. I wish I would have started sooner. What an incredible thing! Thus far, it gives me some of the best relief (and it’s all natural and FREE).

I started with Mom in the fall but sort of fell off over Christmas. This weekend I meditated yesterday afternoon and found huge improvement in my pain and energy that lasted the entire day. WTF?!?! I did a mindful meditation for pain relief by Jon Kabat-Zinn. And this morning, before sitting down to write this post, I did a 40-minute meditation I found on YouTube. It was hypnosis for self-healing with Michael Sealey, and, again, I feel much more awake, pain is more in the background and I’m tremendously peaceful.

That’s about it for the update.

Today’s Meditation:

Today’s Sounds:

Happy day!

Natalie

Chronicles of an Ice Pack Queen

So the battle continues. It’s been about a week and a half since my last post and not much has changed. The rib pain and I continue to do our dance. It’s driving me bonkers and making what little gains in sleep I had been getting (amen to four hours in a row) regress back to two or three hour chunks. The interesting thing is the ice packs and heating pads both feel good when they are on but they both provide little long-term relief. Such is life. I am either freezing or sweating…

I did make it to meditation with Mom this week, and I still can’t believe how much I enjoy it. I am not really good at it yet, but it’s a wonderful practice. I feel very “relaxed and zen” afterwards…like I’ve had a deep rest. I can see how working this into my daily life at some point is going to be incredibly valuable.

Also hit the gym with Jen once. It was super light. A little bit on the more horizontal bike, some light weights on the circuit and then as a reward….hydro therapy massage bed. O.M.G. That thing is amazing. I use it as my motivation to get to the gym.

I also had a call from long-term disability, which was good in the sense of my file moving forward but stressful at the same time. Hubby actually saw great humour and irony in the fact that they called the cognitively impaired person to have her talk extensively, and with great detail and articulation, about her impairments. I hadn’t thought about that until he mentioned it. I was comfortable knowing the call was coming and felt completely equipped and ready but after I told hubby about the conversation, I realized that I may not have been the right person to ask.

I didn’t tell her how I used to love to get up in the mornings and spend a 45 minutes in my beautiful “get ready room” putting on makeup and curling my hair. I haven’t touched a blow dryer, curling iron or straightener since the end of June and haven’t shellacked my face even once…sniff….And, if I am being honest with y’all, cause you know that’s how we roll, I rarely even brush my hair. I just tie it up on the top of my head. Hubby said he’s see it down once this summer, and I didn’t even style it, I just brushed it. Sad.

I didn’t tell her how I used to love to take a nice, luxurious bath every single night. It was my thing. The idea is now overwhelming. When did taking a bath get over-fawking-whelming??? Getting in, washing, shaving, climbing out, drying, moisturizing…..I. Just. Can’t. I take a bath once a week now, and it’s usually on laundry day when hubby wants to wash my gym pants. I live in the same pair (and same shirt) day and night until laundry day when Hubby says they can stand on their own and enough is enough…

I didn’t tell her how I used to golf and how deeply I loved it but haven’t seen a green this year…haven’t felt the glove in my hand, the connection to the ball, the FUN and laughs Hubby and I used to have. And how I would normally be gearing up with excitment for a winter season of snowmobiling, downhill skiing, cross country skiing and snow shoeing. Instead I am gearing up to sell our snowmobiles because I couldn’t go even if we had enough snow.

I didn’t tell her about the many family events and activities I’ve had to enjoy via photos on Facebook after the fact instead of attending in person because I am in too much pain to attend. It broke my heart to miss this year’s annual pumpkin carving day…I sit home and cry…I feel like a failure. I feel like I am letting everyone down, all the fawking time, but I don’t know how to make it better and even if I did, I am not sure I’d have the energy, or smarts, to make it happen.

I didn’t tell her that Hubby (and very close friends and family) talk a lot about how different I am, both in personality and in how I look. How my spark is gone. How droopy my eyes are. How gray my skin can get. How overwhelmed and exhausted I look. And the celebration we have when I have a day where I seem more alert. My God, I used to be ON FAWKING FIRE and now “being alert” is a win. WTF!

She asked about hobbies, and I told her about my blog and how much it helps. But I didn’t tell her that what used to take me an hour or two to write, now takes me three or four days. The struggle to find words and sentences to string together to express how I feel and think, something that used to come to me as naturally as breathing, now takes exhaustive effort (and extensive rewrites). Must I lose this too?

I didn’t tell her about how insane my brain feels like inside. How it’s on some kind of frantic loop, ALL THE TIME! When I  think about something (like groceries I need Hubby to get, a bill I need to remember to pay, or something I want to research), how it plays over and over and over and over and over and over in my head. And that as soon as I stop and try to make said list, do the research or pay the bill, as soon as I stop to DO IT, it disappears…POOF…and I am left with a thread of something I know I needed to do…but  can no longer remember. I mean, we’ve all experienced that from time to time but this is like your every-so-often experience just snorted fifteen lines of cocaine. Somedays I wonder if I am losing my mind. Is this what going crazy feels like?

I didn’t tell her that I have to watch TV or read to the point of exhaustion so that I can shut my brain off long enough to ignore the pain and the racing thoughts so I can fall asleep. It’s this endless loop of OCD insanity about shit I don’t even care about. Honestly, I’ve always found great comfort in talking to myself but now I can’t shut myself up. WTF?

I didn’t tell her how every day I feel like I lose a little bit more of myself and that I am starting to wonder if I’ll ever get it back. Or that I am barely keeping the question of “what will you do if this is it…if this is your life here on out…” at arm’s length because if it comes any closer, I am terrified I will shatter into a million pieces and lose myself completely.

Hubby asked why I didn’t tell her all of that (and more…) and honestly, when put on the spot, I just don’t have the cognitive ability to pull it together. I needed time to think and ponder the questions, consider the information, talk to Hubby or Mom to get their perspective. Information, knowledge and understanding that used to be accessible in a split second now takes hours or days to process, make sense of and put together.

But also, I think it’s something we are either naturally tuned to doing or maybe it’s part of how we are raised. I feel like it’s in our nature to downplay how shitty we feel, how extensive the impairments are and the true impact of life’s challenges on one’s life. People ask how I am doing all the time, and I say “the same…still fighting the good fight…” and I usually move into either talking about what new thing might help or I move the conversation to them. But don’t we all do that, to some degree anyway?

Your coworker or bestie fires you a text to ask how you are and frankly, you’ve had an all star shitty morning…got in a fight with your man, your kids were grating on your last nerve, you had terrible night sleep, got some kind of weird kink in your neck, you didn’t have time to eat and you have a deadline hanging over your head but you reply “not bad…you? Wanna do lunch this week and catch up?

I mean honestly, when people ask me “how are you?” do they really want to hear the same shit, every time…that I am still drowning in pain, that there is never, ever a single fawking moment in the day where I am without pain humming through my body…how every single time I wake up from sleep, it’s from that pain literally vibrating through my body…in my feet, my ankles, my calves, my thighs, my arms, my back, my neck, my ribs etc…and that it never stops. That medications help take the edge off but nothing stops the pain. That I am so deeply depressed that it’s getting harder and harder to honestly care if I’ll ever get better.

Instead I hit the high points. Had four hours sleep in a row a couple days ago, the rib pain is still pretty nasty but I’m getting through it, and starting to look at a plant-based diet to see if that helps…

Frankly I think it’s a coping mechanism too. I reread this post and shuddered. I could EASILY drown in self pity, frustration and anger if I sat and thought about what I’ve lost thus far, how far I’ve fallen, and the fact that we don’t know when, or even if, I’ll get my old self back day in and day out, every day. Mother of God! I have to keep it high level, not just with other people, but I guess with myself as well, so that I can hang onto what little will and motivation I have to keep pushing. Pushing to try a better diet, to try meditating, to call the chronic pain guy, to reach out to see a psychologist, to try to get out of the house a couple times a week, to take that bath once a week…

If I didn’t, I’m not sure I’d ever get out of this gravity chair again.

Natalie

Chronicles of the Dark & Desperate…Part 2

First I’d like to say a HUGE thank you to everyone who is following the blog, leaving comments here and on Facebook, the messages and texts I’ve received with love, support and encouragement. I am so blessed to have you all in my corner!

Highlights:

  • Weight: 201
  • Pain: 
    • Left Ribs: 10
    • Lower Back: 6
    • Feet & Ankles: 3
    • Legs: 2
    • Left Arm: 2
  • Migraine: Monday & Tuesday
  • Water (116 Ounces Daily): No
  • Eating (According to The Plan): No

I saw the Doc Monday morning. I had a complete breakdown in her office. Understandable given my pain level in my left ribs was through the roof, I had a couple of migraines and had slept very little. I was very much still in my dark place.

She immediately sent me to the hospital for X-rays on the ribs. I didn’t really see the point, given my experience, I knew it was highly unlikely anything would show up and what do they do for injured ribs anyway? But I went up and haven’t heard from her so?! She’s also sending me for another complete blood panel since my last one is six months old.

She increased one of my antidepressants, Cymbalta (also on Citalopram). She added a pain medication to try, Tramadol. It’s not narcotic, so I was willing to give it a try. And I am continuing with my anti-inflammatory, nighttime meds and my muscle relaxer.

More prescriptions. More drugs. Disappointing but not surprised. I know it isn’t the long-term answer but I do know right now it’s necessary or I’d lose my mind further than I already have.

So yesterday was another very dark day. I cried most of the day. I felt hopeless, defeated and I wallowed. We’ve had a ton of break ins in our neighbourhood this year, and, as I drove in the yard, I was actually hoping the bastards were there so I could just beat the shit out of somebody. I’m angry. So fawking angry. I’m frustrated. I feel like screaming at my body in a mirror to shape the fawk up. Instead I ate McDonald’s and pizza and basically allowed myself to just throw in the towel.

Monday night I slept on and off in two/three hour chunks. And today, much the same. Even though it was broken, the sleep definitely helped take the edge off my overwhelming emotions. I don’t feel quite as down today. Unfortunately, I am not finding any relief from the meds the doc prescribed…at least not yet. I’ll keep taking them to see if a cumulative approach offers any relief. The migraine has also continued to stock me most of the day and evening. Damn it.

On a positive (because many of you fabulous peeps reminded me to find the wins, no matter how big or small), my aunt Andrea reached out after reading my last post regarding trying a plant-based diet next. Her and my uncle Jack have been doing a plant-based diet for two years now and are experiencing tremendous success. Uncle Jack told me about the amazing results he’s experienced fighting his fibromyalgia with his approach.

So instead of stalking potential thieves in the neighbourhood, I clicked on everything aunt Andrea sent, and I watched a couple documentaries on Netflix that totally blew my mind.

Forks Over Knives was the first one. Then I watched the two documentaries that Joe Cross did “Fat, Sick & Nearly Dead” and his sequel “Fat, Sick & Nearly Dead II.” Then I also checked out “Engine to Diet” and “Chocolate, Cheese, Meat & Sugar – Physically Addictive.” Mind Blown!

I still have lots more to research and learning to do but I am leaning towards this being my next thing to try. I’d like to sort of combine The Plan with a more plant-based diet but am not 100% sure. So I shall take the rest of the week and weekend to rest and focus on learning everything I can about plant-based diets and then make a plan.

I know things take time. I know I need to be patient. But I find that doing research and expanding my knowledge is definitely one thing that helps me stay focused on what I can do, what might work etc….a wee bit of hope! Not to mention with my pain level so high and my energy in the shitter, sitting back surfing the net and watching Netflix or YouTube between naps is manageable.

Natalie

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